HIDDEN amongst the tens thousands of words that make up the Human Fertilisation and Embryology Bill is clause 14 (4)(9).

This rather innocuous looking part of the Bill would make it illegal for any couple having IVF to choose to have an embryo implanted which had been found to contain genes for a serious medical condition.

It states that, “Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop a serious physical or mental disability; a serious illness, or any other serious medical condition, must not be preferred to those that are not known to have such an abnormality.”

On face value this appears to be relatively uncontroversial, after all, since scientists made the first genetic breakthroughs and began to identify the significant roles genes play in human health, we have been promised a world free from some of the most serious diseases, which have so far blighted mankind.

That utopia came a step closer with the advent of pre-implantation genetic diagnosis, which allows experts to screen IVF-created embryos for any problems or genetic defects before they are planted in the womb. It is the same technology which has been used in the creation of some so-called saviour siblings.

But a close reading of the explanatory notes – and on hearing comments made by Baroness Deech in the House of Lords – it became apparent that deafness was considered one of these serious medical conditions.

Suddenly clause 14 (4)(9) no longer looks so innocent or well-meaning. Indeed, for many – both inside and outside the deaf community – it smacks of eugenics and a serious breach of human rights.

Dr Anna Middleton, a consultant research genetic counsellor, who is currently working at Cardiff University, said: “Clause 14 (4)(9) says that an embryo which has genes for a serious medical condition must not be preferred to an embryo that does not. By law a couple would have to implant the embryo which does not contain those genes.

“This sort of makes sense to test an embryo when there may be any possibility of a serious life-threatening condition, such as cystic fibrosis or really severe cancer. A couple could go through IVF, have the embryos created and tested and then implant those that don’t have certain genes.

“The clause becomes relevant to deafness because Baroness Deech, in the House of Lords, mentioned that the clause had been added specifically to prevent deaf couples from having deaf embryos implanted.”

It is understood that Clause 14 (4)(9) arose from the case of a lesbian couple in US who deliberately chose to have a deaf baby in 2002.

Sharon Duchesneau and Candy McCullough, who have both been deaf since birth, were turned down by a series of sperm banks they approached looking for a donor suffering from congenital deafness.

The couple, from Bethesda, Maryland, who are both mental health therapists and deaf therapists, eventually approached a family friend who was totally deaf, and had five generations of deafness in his family. He donated sperm which was used to impregnate Ms Duchesneau.

Baby Gauvin McCullough was born with a small amount of hearing in one ear. Speaking six years ago the couple said they would let him decide when he is older if he wants to wear a hearing aid.

While she was pregnant, Ms Duchesneau said: “It would be nice to have a deaf child who is the same as us. I think that would be a wonderful experience.

“You know, if we can have that chance, why not take it? A hearing baby would be a blessing. A deaf baby would be a special blessing.”

Ms McCullough added: “Some people look at it like, ‘Oh my gosh, you shouldn’t have a child who has a disability.’”

There are more than 100 genes associated with deafness and the condition can be passed on through the genes, although late onset of deafness is unlikely to be genetic.

Clause 14 (4)(9) raises a number of questions, not least the central one of whether deafness is a serious medical condition or disability – some in the deaf community have argued that it is not a serious disability, but rather a communications issue.

And then there are the tricky ethical and human rights issues.

Dr Middleton, who is currently leading a national study into what deaf people think about genetics, and was involved in the public debate Deaf Kids – Who Decides? in Cardiff this week, said: “For people who are deaf, have a strong family history of deafness and use sign language, the issue is that they want the same reproductive rights as hearing people.

“They feel that if they have equal status in society, when then, if they go for IVF and have embryos tested, should they be forced to only keep the hearing ones? No-one has said that they want to create a designer race of deaf people, but they do want the same choices.”

Tomato Lichy and his partner Paula Garfield, who live in London and who were both born with congenital deafness, want a second deaf child – their first child is deaf.

Mr Lichy said, about the clause 14 proposals, “Really it is not a question of wanting the baby to be deaf, it is more the case that the deaf embryo that may be rejected for a hearing embryo.

“So really we feel that it is very important that the Government does not continue down this path.

“In a sense saying that deaf people are not on equal terms with hearing people. And I think it is going to cause a lot of problems if you look at the family unit with deaf parents and a deaf child.

“Later on we would have to explain to that deaf child that, well, your deaf brother, your sister is hearing. And that is a result not of natural causes, but the result of the Government deciding that your deaf brother or sister was not an equal, and was therefore got rid of.”

The British Deaf Association is also strongly opposed to clause 14 (4)(9). In a letter to members of the House of Lords, the charity’s chair Francis Murphy, said the Bill, “Restricts the reproductive liberty for citizens who possess specific characteristics, including deaf people.

“It prevents the birth of certain kinds of people, including, but not limited to deaf people.”

He added, “Deaf people seeking fertility treatment will be denied access to these services if they possess genetic conditions that result only in the formation of embryos associated with deafness.

“Consider the infertile deaf couple desiring to have a child. Before fertility testing commences, genetic testing is conducted on the couple, and results indicate that all of their offspring will be deaf.

“The infertile couple’s request for fertility services is denied for the reason that embryos associated with genetic deafness are not preferred.

“Thus, the couple is denied the opportunity to have any children based on the stated preference against ‘abnormality’.”

But Jackie Ballard, RNID chief executive, said: “Decisions about which embryo to implant are for parents and their clinicians, but RNID does not support the selection of a deaf embryo for IVF implantation where a hearing embryo is available.

“Where deaf or hearing parents have deaf children with or without IVF treatment, RNID would of course unconditionally support the child and their family.

“We will be working with MPs to ensure that no deaf parent feels under any pressure to have their embryos screened during IVF treatment, and ensure proper communication support is in place so parents can make an informed decision.”

The Deaf Kids: Who Decides? debate, will be held at Techniquest in Cardiff on Wednesday evening and will bring together lay deaf and hearing people and leading academics in the field of genetics, medical ethics, sign language, and deaf studies to discuss the main issues raised by the Bill.

Chaired by Graham Turner, chair of interpreting and translation studies at Heriot-Watt University, other speakers include Dr Middleton, Dr Steve Emery, a British Sign Language research associate at Heriot-Watt University, and Dr Colin Gavaghan, a lecturer in medical law and ethics at the University of Glasgow.